The Long Farewell

(This caregiver story is reproduced here with permission from the author, and appeared originally on her blog, Thinking Faithfully.)

My father-in-law, Dan Nyhart, died three weeks ago. It was sudden in a sense: we got a call on Thursday that he was running a fever, then were told Friday that it was looking serious, and by early Saturday morning he was gone. But he had been leaving us for at least seven years already, fading away piece by piece into one of the world’s cruel exit strategies, dementia with Lewy bodies.

There are many painful things about loving someone who is being lost to the fog of dementia, but one of the hardest is that there is no single, particular moment to say goodby. Instead, the losses begin subtly and pile up for months and for years. When a diagnosis is finally made and everyone feels the dread settle in, it’s already impossible to remember the first sign, the beginning of the unraveling. And by then, the one you love is already foggy around the edges. He’s still there of course, but he isn’t all there, and when do you get to grieve the part of him that’s already gone? Instead, you cling to what’s still there, knowing that what you have of him now will seem a miracle a year from now, or in two years, when he is that much more lost to the fog.

Nearly three years ago, the summer before Dan finally had to enter a nursing home, I sat with him in front of the cove in Maine at the family camp he loved so well. He was already a long distance down his dim path of dementia, and it had been years since he had truly been himself. The sharp mind — a law professor at MIT most of his working life — had been so dulled by disease that it was hard for him to follow even a simple conversation. And sitting there with him, taking my turn babysitting really, I thought about how much I needed and wanted a chance to say goodbye.

I’m pretty sure he didn’t understand much of what I said, but I held his hand and told him all I could remember about first meeting him, about how grateful I was for the way he welcomed me into the family, and how much I loved his kindness, his humor, his generous spirit. I asked him to try to remember, in the times to come, that even if he felt afraid, we would not leave him to walk alone — that he would be accompanied through the illness. I told him I loved him, and he got teary and said he loved me too. I felt a little better after that; a sense that I had chosen for myself a random moment of farewell.

And then he went on living, and slipping away, for two and a half more years, the last two in a nursing home. How well did I keep my promise to walk with him through this? Not well, I think. We live just two hours drive away, but probably visited no more often than once every six or eight weeks. There were others to share it of course, my mother-in-law, my husbands siblings, family friends. But I always thought we’d go more often than we did. We’re all so busy, aren’t we? Three kids and two jobs and all the details that fill in the standard American life. But the rest of the truth is that it was hard to want to go to the nursing home, hard to see him there and to not know, each time, how clear or foggy he would be.

So I feel lucky that in his last month of life I had two visits with him by myself, a couple of weeks apart; and I was especially blessed by the last one, the week before Thanksgiving. He wasn’t having a good day. He didn’t recognize me at first, and after fifteen minutes of trying to visit it was clear that he could hardly put two words together. He kept yawning hugely, so I finally suggested he just lie down on the bed and let me massage his hands. I pulled out some lotion and rubbed each hand for ten minutes, slowing myself down, willing my mind to be still and to just see the hand, hold the fingers, touch the skin. He gave little murmurs of pleasure, and that seemed to be enough.

When it was time to go I bent down over his slack face and said, “Dan, I’ll give your love to Nick and Sam and the girls”, and suddenly there was a momentary break in the fog and the sun came through. He opened his eyes and whispered, “Well, how can you give it if you don’t get it first?”, and raised his head up to give me a big kiss. That was the only full sentence he spoke in our whole visit, and that was the last time I saw him on this earth.

With his death, we are all free now to grieve him at last, to grieve all the small losses that litter the path of dementia and together add up to the huge loss of this beloved human being. I have felt deeply blessed by that final goodbye, and the surprise of that little window of lucidity where I had no reason to expect one at all. There are so many mysteries in our dying, as in our birth, as in our living. Sometimes it’s enough to let the heart bow to it all: the great gift of loving, the great grief of letting go. It’s all tangled up together. And it is enough.